Mental illness and the loss of patient privacy

People in the US are big on their privacy, quite reasonably — people should be able to enjoy privacy in their homes and persons, and this shouldn’t get violated for the convenience of others, society, or the government’s desires. People are concerned in particular about medical privacy, given the high risks of discrimination, whether in housing or employment, social settings, or health care, an issue that was particularly acute before Obamacare took on preexisting conditions clauses in an attempt to make it easier for people with complex medical issues to access comprehensive care.

In most settings, people in the US agree that the right to privacy should be absolute, and in fact there’s usually considerable outrage when private data is released, inadvertently or deliberately. It’s good that so many people are attentive to privacy issues and care about them so passionately, especially because these rights are being steadily eroded, and without involvement from the public, the government will continue pushing the limit until there’s no limit left to push. So pat yourself on the back, members of the public, for keeping government incursions on private life under scrutiny.

There’s one area, however, there the public generally supports breaches of privacy: In the case of mentally ill people. Here, all bets are off, and people not only don’t think that mentally ill people are entitled to a reasonable expectation of privacy, but think there’s almost a social obligation to disclose mental health records to varying degrees. These attitudes are routinely advanced for a variety of reasons, but most of them surround myths around mental health and violence, implying that for the social good, the private lives of mentally ill people must be ripped bare for people to scruntinise and pick through like so much nut meat.

This has come up in particular with laws demanding that practitioners disclose mental health records to agencies responsible for regulating background checks for firearms. This puts mental health care providers in a compromised position, as it demands that they simultaneously treat and betray patients — something that could lead patients to refuse to seek treatment altogether, fearing an outing. These proposals often come with the caveat that of course identifying information and details would be obscured, but that’s cold comfort, because once there’s a backdoor into a medical record, it’s easier to access the whole thing. Perhaps now when Jane Jones gets a background check it just says she’s ineligible to buy a weapon, but eventually that might show up specifically as a mental health flag, which could turn into a specific diagnosis, which could turn into a point of access to her psychiatric record.

Already, mental health providers are subject to some complicated mandated reporting laws, situations in which they must betray patient confidentiality for public safety or patient welfare — if patients appear to pose a clear and present danger to themselves or others, this must be reported. If it isn’t, and the patient later goes on to commit an act of violence, providers can be held liable. Of course, mandated reporting is couched as something that benefits patients, but it also serves as a constant reminder to the public that mentally ill people are so dangerous that we need special laws to clearly and explicitly make it possible to breach their confidentiality — ‘for their own good.’

Demands that mental health records be made public are very dangerous and can become an extremely slippery slope. If a background check system can be used to uncover a mental health diagnosis with respect to gun ownership, that information may well crop up elsewhere as well, exposing unwitting people to outing and the threat of discrimination. Employers, for example, could access that information, as could creditors, landlords, and other entities. Potentially in the case of a data breach, that information could even be made broadly public, as people who commit data breaches often post personally identifying information online, whether they’re trying to make a point or compromise the people involved. Suddenly, private matters become public.

Privacy is important. Privacy for everyone is important. Insisting that mentally ill people are an exceptional class creates a dehumanising two-tiered system in which the privacy of some social groups matters more than others, and in which authorities take some privacy and security concerns more seriously than others. Every time people advocate for compromises to patient privacy, they chip away at the protections designed to keep people, and their data, safe. Weak points in the system become penetration points that unscrupulous people can exploit to do untold damage, which is considered an acceptable risk by sane people because they aren’t the ones affected when mental health records are released into the wild.

Demonising mentally ill people has always been a popular sport, and it’s become more so in recent years, with people blaming violence and a host of other public problems on mentally ill people instead of evaluating their root causes. This vilification has contributed to the attitude that mentally ill people deserve no privacy, that instead their lives and medical histories should be freely accessible, as though they have somehow forfeited something by virtue of a quirk in their brain chemistry — a concentration of chemicals, a genetic legacy, whatever the root cause of mental illness, it’s not a crime, and it’s not something that merits punishment. Instead, mentally ill people are plopped into fishbowls for everyone to gawk at, because, after all, they aren’t human.

Image: A doctor looks over a patient’s medical record, World Bank Photo Collection, Flickr